School Holiday Yesterday

If you look at the distance between me and the floor, the space between my body and the floor, it tells a story. Black was me yesterday and worse yet, it was PAINFUL. My back was sore after trying. And the trying didn’t last very long.

This is now beyond urgent. This is scary. My right hip is behaving wrong too. Stiffer than ever, and a horrible burning, pulling pain I’ve never experienced in my life till this horrible long night that has just passed. It’s like the joint is freezing up. I would swear it is fusing. I wonder what an MRI and bone scan would show today as compared to last year’s. I have stumbled going to the loo. And when I forced myself to try sleep after the pain woke me and forced me to take a pain pill way too early, I was back in nightmare mode. I dreamt I’d injected myself with Cosentyx and was driving somewhere but then a strange woman took over and she was driving erratically and I thought I’d die in a car crash. I reached my destination – some sort of guest house- and the pain in the front of my hip was so bad that I had to lift my skirt to look at my thigh where I’d injected. My thigh was blue. A deep blue bruise and it was hard like bone and was bleeding. It had been bleeding for hours! Many trails of blood. The hardness scared me. Did I have a huge blood clot? Was I going to lose my leg??

I hadn’t had such vivid nightmares in five days. I also had increased my amytrypiline dosage but then reduced it in the hopes it was just a placebo effect that made me sleep a bit better on the higher dose. I guess not. I needed it to sleep longer and better.

I’m now scared. I don’t want to need a hip replacement. I don’t know if there’s any solution for a fused SI joint. And I know that fused SI joints cause problems for the knees. Knees already sore since Saturday. I lifted my arm to pull my blankets up over my shoulder and my shoulder screamed in pain.

This AS thing is quite a nightmare! Yesterday, I couldn’t reach. Too tired and too sore. My girl was happy but sad that the holiday was because of increased pain.

And no, I didn’t have any Salazopyrin yesterday. I’ll start again today though my knee did start again before yesterday… This probably is so incoherent. I just needed to document where I am. And no, no answer from the rheumatologist either. I wish this was an issue a GP could solve. All I need is a prescription for the Cosentyx! And lots of money when it arrives at the pharmacy. But I need to try because sniff is too awful to bear.